Q&A: Caregivers offer survival tips

Jeff Tucker (left) and Larry Gnatzig have been together for 20 years. Tucker was diagnosed a few years ago with frontotemporal dementia, also known as early onset dementia. Gnatzig is Tucker's caregiver.(Photo: Angela Peterson/Milwaukee Journal Sentinel)

Larry Gnatzig’s life took a hard turn when his partner of more than two decades, Jeff Tucker, became suddenly withdrawn and uncommunicative. In the fall of 2015, Tucker, then 59, was diagnosed with frontotemporal dementia, sometimes described as early onset dementia. Although Tucker can be left alone, he doesn’t drive or use the stove to cook.

How did your life change when you became Jeff’s caregiver? I turned from a regular, pretty low-key guy going about my business into an advocate. At the time of Jeff’s diagnosis, we were denied disability support from the county because he was too young to qualify for older adult services and because they determined he wasn’t disabled enough to need nursing home-level care. No one had training to understand the needs of people with dementia. I became Jeff’s voice. I pushed at the county and state level until someone listened. Because of my advocacy, there have been systemic changes in the screening process and how outreach workers are trained, including sensitivities to the needs of LGBT couples.

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When Jeff Tucker’s memory started failing, he and partner Larry Gnatzig struggled to get the services he needed.
Patrick Thomas, Marquette University

What are some of your biggest challenges? Feeling overwhelmed and isolated. People all the time ask how Jeff is. Sometimes I wish someone would say, “How’s Larry?” When you get a diagnosis like this, friends and family can disappear because they are afraid. People don’t realize that the entire family is affected.

What helps you balance your duties? Asking for help and accepting it when it’s given. I have a good manager at work who gives me the flexibility I need. And I have a cousin who just sort of takes Jeff off whenever we have family get-togethers. Jeff likes and trusts him. That gives me a break.

What do you wish you had? I’m now the sole breadwinner and I take unpaid FMLA when I need to. That affects us financially. Sometimes I wish I could just be in my home all by myself for a little while. I know Jeff would go to a facility for a weekend if I asked him, but that would be too disruptive, and I won’t do it.

What are your survival techniques? I’m fortunate that I can take trips by myself for respite. I just got back from Australia. And I rely on my faith and family, especially spending time with my two daughters and my grandchildren. Every now and then on the way home from work, I stop at a park and have a smoke and sit in the quiet because sometimes I just don’t want to go home. It’s too ugly.

Helpful resources: The Alzheimer’s Association has been a godsend. I started taking classes as soon as Jeff was diagnosed. And last year I started attending a group for people with frontotemporal dementia. This is such a different animal than Alzheimer’s, and people don’t always understand that. It’s amazingly helpful to talk to other people who get it.

Star Tribune reporter Jackie Crosby met with dozens of families and interviewed more than 100 experts to document the burdens on family caregivers as society ages. Her work was supported by a nine-month O’Brien Fellowship in Public Service Journalism at Marquette University. The project includes contributions from Marquette students Jack Goods, Patrick Thomas and Yiren Yang. Crosby can be reached at jackie.crosby@startribune.com. You can find other stories at startribune.com/care.